Suffering in silence – infertility

2020 has been a really tough year so far. Tragically many people have lost their lives. Many people have lost loved ones. Not a single person is living their normal life, and we are not anywhere near to seeing any light at the end of the tunnel. A scary time, a time when mental health issues may be exacerbated, a time where fragile relationships may become more fragmented. A time when a hug from a good friend or parent is not going to be possible.

Suppose you had been waiting for something, hoping for the new decade to be ‘your time’. Imagine you had suffered for several years, unable to do something that you had spent your childhood dreaming of, and assuming, would just happen. Imagine if all of those questions from well meaning people about ‘the patter of tiny feet’ had been something that you had been obsessing about for more years than you care to admit. Imagine if your name had come to the top of the list and you had finally been given your appointment with a fertility specialist. Imagine if, just at that moment, the country went into lockdown, and imagine the devastation of having to wait even longer.

You only have to look at social media during spring 2020 and it’s littered with jokey posts about the quarantine baby boom and posts about how many ‘first babies’ will be made in lockdown etc etc. Imagine if every one of those broke your heart in two.

As IVF advocate for the #MTPTproject, I regularly have people DM me and talk with me about their fertility journey. I’m not a doctor, I’m not an expert, but I am a survivor of difficult fertility journey which I will give you an insight into a little later.

I really feel for the people who have had their treatment postponed during COVID-19. I have heard that whilst egg collections are still happening, that fresh transfers are not. That embryos are being frozen for a time when it is safer and when there is less uncertainty. For anyone on a fertility journey, uncertainty is a given, you become a master of uncertainty.

I have to clarify, this blog is not about me, but it is to offer a little support for those who are currently in the situation that I have just described. I will however share with you my story and in doing so I hope that it helps others.

My name is Nicola, and I’m an over sharer. It is something I have used as a coping mechanism but I know that most people aren’t like me. For a great many people, infertility is a painful and private journey. I’m not sure whether talking about it is better, or if being private is preferable, but it is really important to remember that you do whatever is right for you. If you decide to talk about it, then the downside is that people will constantly ask questions and this can be extremely painful at times of disappointment (my advice is pick well who you chose to tell). If you decide not to talk about it, then be aware that there will be times that you need a bit of space and emotional support, that you might not get because they are not aware what you are going through.

My fertility journey started in early 2012. I was a divorced mother of two boys (aged 4 and 6) living with a new partner. I had fallen pregnant in January 2012 whilst on the pill, in-spite of this we were over the moon. My partner (now husband) had no children of his own. We decided not to tell anyone. One morning I started to bleed. I was obviously worried but went to school because I didn’t really know what else to do. That evening I took another test and the line was fainter than it had been before. As I lost the pregnancy I continued to take tests, watching the line get fainter day by day. I didn’t process the loss. We didn’t tell anyone and I didn’t take time off work. We decided to try for another baby but my cycle didn’t return….. at all. About 9 months later I saw my doctor and was prescribed provera. This drug changed my personality. In addition to significant weight gain, it made me very angry and emotional.

I was diagnosed as having PCOS (polycystic ovary syndrome) and then started a horrific year of using provera and clomid. This combination was really hard. The change in personality, living life in two week chunks, the hundreds of ovulation tests, the hundreds of pregnancy tests (this is not an exaggeration I bought packs of 100 from eBay). I would use them daily. I would do them very early in the morning, during the day and in the evening. I would use a filter on the phone to convert photos of the sticks into negatives to see if there were lines. There weren’t, it never happened.

I had not had any problems with fertility in my 20’s. I unknowingly had PCOS but it hadn’t affected me when I was young. My diagnosis was secondary infertility linked to PCOS. I knew I was lucky to already have two children, and at times felt guilty about wanting more, but also desperately wanted to have a baby with my new husband.

Over the next year life got considerably harder. I got a job in a new school in September 2013. We broke up from the school we worked at together at the end of July 2013. The following Monday my mother in law died suddenly. My own mother was undergoing aggressive treatment for cancer and by Christmas 2013 we knew she was not going to survive either. In the November 2013 I had an operation to burn the cysts off my ovaries (ovarian drilling), and just after my mum died in March 2014, we were sent our appointment to start IVF. I missed my mum and having her support.

It probably hadn’t been a good time to move jobs but the funny thing about infertility is that you really don’t know if you are ever going to get pregnant so I took the view that I would carry on with my career assuming that I wouldn’t conceive, while desperately hoping that I would.

It’s a really hard decision whether to tell your employers that you are undergoing fertility treatment. People don’t tell their employers when they are trying to conceive naturally, and statistically someone undergoing fertility treatment is less likely to get pregnant. Some employers are very supportive, but others aren’t. I wished that someone understood what I was going through. I felt isolated and desperate. I have heard of lots of examples where this has been exacerbated by insensitive comments/ treatment by employers. I have also had senior leaders contact me to find out more about how to support staff undergoing treatment and this is fantastic, I actively encourage this be happen.

It fell that my egg collection and transfer coincided with May half term so I didn’t have any days off school. I had a few later starts for 8.30am scans but it impacted very little on my work which was just as well because around that time we had an Ofsted monitoring visit and then a full section 5 inspection.

Interestingly, stress is a factor with infertility and in the 18 months leading up to having IVF I went through five section 8 Ofsted inspections and one section 5 (across two schools). I also moved house, my divorce went through, lost my mum and my partners mum, all whilst on a cocktail of medication that made me neurotic and yet, I guarantee that none of this showed in my work. While happy to talk about the mechanics of my fertility journey, I hid how I felt. I hid the cyclical waves of optimism, followed by crushing disappointment. I really did live my life two weeks at a time. They say life is what is happening whilst you are planning something else and it’s true, I lost 3 years of my life where I constantly lived in the future, planning for the future.

We were really lucky that our first round of IVF was a success. Our son was born the following January. We had only planned to have one baby and we had finally achieved that. I had two spare frozen embryos that I had planned to give away. We then found out I was too old (by 5 weeks) at conception to have this option – so they stayed frozen.

After 2 years of paying for the embryos to remain frozen we decided to implant both on a natural cycle. I had got to the point of being quite adverse to the thought of defrosting them and knew they would be destroyed if they were used for research. We wanted to give them a chance of life.

Again I didn’t need any time off work because the clinic was able to do the transfer on a weekend. Two weeks later I had a positive pregnancy test. On the last day of term I went for a scan and found out that both had implanted. As it was a 6 week scan it was very early but the one had a little flickering heart beat. The other didn’t but it could have just been a bit early. Sadly, the 9, 12 and 16 week scans showed that that little one didn’t make it and eventually was gone by the 20 week scan.

My fourth (and final) son was born February 2018. I know I was lucky. Lots of people aren’t. Many people carry on with heartbreak, the physical and mental drain of multiple rounds. Many people accumulate considerable debt, and for many relationships this can all be an enormous strain. For me the years preceding the IVF were hardest. The daily injections during IVF were much easier than the provera and clomid cocktail I had experienced prior to this. During IVF my care was in the hands of experts.

If you are a school leader then having compassion beats knowledge of fertility treatments, but having an understanding of the processes within different treatments would make put you in a better position to be compassionate.

If you are aware of an employee going through fertility treatment then understand that it is an incredibly difficult and painful process that people deal with in different ways. Be respectful but compassionate, and be willing to listen. There is help out there if you want to know how to support them*. Everyone’s journey is different, some struggle throughout and will need a lot of support, some will be very private and chose not to discuss it, some will want you to understand the process. Ask them how they want to be supported.

So that was my journey. For any of you currently in the midst of this, my best wishes are with you and my DMs are always open. If you are going through fertility treatments then I would recommend you join forums on Facebook or elsewhere. Sharing your journey with a group of strangers can be daunting but if nothing else, you can lurk and gain solace in knowing you are not alone. You are not alone.

* Through the #MTPTproject we want employers to become more aware of fertility treatments and how to support staff. A large number of the teaching profession are affected by infertility. Please contact us if this is something you would like to know more about.

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